Well, How Did I Get Here?

We received the results of my daughter’s Day o’Testing, and the results came back as everyone pretty much not knowing  the cause of my daughter’s multiple speech and behavioral issues.

Which is SO not helpful.

I should start by stating that my daughter was not diagnosed as being on the autistic spectrum.  But let us just say that she needed a home run, and only scored a triple.  She needed one more box to be checked to have a confident diagnosis, and the team of doctors didn’t feel they could do that.  So, that leaves us with a little person who has some issues, they just don’t fall into neat categories.  They felt that the ABA therapy that autistic children often receive would not address her particular needs.

Apparently they felt that she has some sensory processing problems (sensation-seeking) that are leading to some of the behavioral things, so she will be getting some occupational therapy for those.

She will continue to receive the maximum speech therapy allowed under our insurance plan, and also that is the maximum recommended for her age group.  She fell into the 7th percentile for expressive speech, which I don’t have to tell you is not all that hot.

I think as a parent, I wanted everything to fall perfectly into those boxes, so that I could point to something definitively and say, “Aha! That is the cause!” and then do everything I can to learn about that something and advocate for her regarding that something.

But that something isn’t anything at the moment, although she will be re-evaluated in six months because as I said, there are things that are not quite right, they just don’t fit into the autistic spectrum at this time.   So I’m left sort of wondering why her speech is so delayed and why she has some of the problems that she does without any medically recognized condition behind them.

Which for me, personally, is difficult.

Any advice?

 

4 Responses to “Well, How Did I Get Here?”

  1. marvel November 15, 2012 at 2:40 pm #

    Start by looking on the bright side: Your child does not meet criteria for autism. Given the extraordinary challenges autistic children face, this is a good thing.

    Second: It’s incorrect to say that there is no “medically recognized condition” behind your daughter’s delay. She has been diagnosed with the medically recognized conditions of speech delay and sensory processing issues. You are frustrated because the terms feel descriptive and slippery, without a known cause to pinpoint as the reason your daughter is the way she is. But that would have been true even if she had fallen on the autism spectrum — while it is likely that autism is a neurodevelopmental disorder with at least a partial genetic cause, this is the scientific equivalent of saying “the brain didn’t grow the way most people’s do but we don’t really know why.” Neuroscience is where microbiology was a century ago; still largely descriptive with an inability to pinpoint biological causes.

    Which means: You have as much of a diagnosis (speech delay and sensory processing disorder) as you would have had, had your daughter been placed on the autistic spectrum. Really. You can still research her diagnosable conditions and advocate for the therapies that are thought most likely to help her.

    And why is she the way she is? Because she was just made that way. And that’s all science can tell you now.

    You are doing the best you can to get her the help she needs, and that is all any mom can do!

  2. pjs November 15, 2012 at 7:35 pm #

    Popped back in to check on your findings. It is good they didn’t gently push her over the wall into a category she isn’t in. That would not have helped her. I think there is much more sensitivity to autism spectrum disorders now, so I doubt they were missing anything. They are treating what she has going on and wanting to re-evaluate her, both excellent things.
    As far as advice, be thankful she isn’t on the spectrum, pay attention to her strengths and weaknesses in speech and OT, and realize she is still growing, so it may go away (The Einstein syndrome) or may develop into a diagnosis.

    This is the hard part. Do the speech and OT. You may become eligible for a PhD in Internet Studies, but otherwise put your worry aside until 6 months from now. And put your wallet aside as well–there are many vendors of alternative therapies on the net who would like to separate worried parents from their money. Your daughter will be checked again, next time with a little more maturity and a baseline comparison. Focus on her having fun for the next 6 months. She’s lucky to have involved caring parents, a plus for any child.

  3. Seana November 20, 2012 at 4:09 pm #

    Basic sign language might help her articulate things she doesn’t have words for because it’s a slightly different part of the brain. I know she has words now, so this might not be as helpful, but before my kids could speak I used sign language with them and they were able to use it back because they develop the capacity for communicating before they develop the capicity for speech.

  4. The gold digger November 21, 2012 at 3:26 pm #

    Oh dear. No advice but sympathies for what sounds like a very frustrating and difficult situation.